(Week 1) 20th June - 30th June 2024 - Well thats over 4 years we dodged it so Ill take that as a win I think? We went to France for a belated 60th birthday celebration , we managed to do most of what I wanted to do then on the sunday I started to feel bad ..... Mark managed to get some covid tests on the monday and yup very quick very strong positive .... We made the decision to travel back home there was nothing stopping us, naturally we masked up and tried our best to avoid people, Mark was negative at this point but then positive when we came back.
Still very strong, my main upset was that I was told I wasnt eligible for anti virals .... apparently I used to be but not any more ... hey ho, I think I am supposed to take that as a good thing but it was a shock and it really floored me. Me being me I managed to pick myself up and work through it, but yes I suppose this is learning to "live with the virus"
Below is on the Sunday, 7 days since I started showing symptoms, quite a bit fainter, I still feel awful though its like a very bad cold at the moment, strange though also not like a typical cold
(Week2) July 1st-7th
Day 9 ...... feck sake still positive 
Day 11, ooohhh it looks negative!!!
Still feeling totally wiped out but being sensible
So I did an experiment, I used another govt test but instead followed the instructions for the chemist one, this means keeping the swab in the fluid for longer and dropping in 4 drops instead of the three the govt one recommended. 
Plus I noticed after years! our neighbour is finally finishing off his shed, been over 2 years I think since he started
I posted above on instagram in regard to the labour win, I'm slightly hopeful but not stupidly so, one thing I do want to see is a better policy on CV, less gaslighting and more seriousness, I can only hope 😊
OK I may be going "slightly" stir crazy 🤣🤣 but I was get hacked off at the govt CV testing kits, I could never properly read the results so had to start using the kits I bought from the chemist, we were rationing those because they were in short supply. But see below the strip on the left as you look at it was govt strip, one on the right is chemist bought. The difference is clear, chemist bought is far clearer, you can hardly see the result on the govt one.
Blimey what a difference! Thankfully it still shows I'm negative but you can really read the result this time. I'm not sure what this proves if anything but I now feel more comfortable using govt ones
(Week 3) 8th - 14th July
OK, testing negative now but totally and utterly wiped out, binging loads of TV, apple TV turns out to be fab, severance, OMG Ted Lasso utterly fantastic, went for very short walk, to traffic lights, utterly wiped me out for 2-3 days. I'm slowly coming round to fact I'll be out of things for a while, I'm surprisingly OK with this, I think being retired makes a huge difference. Phoned up Rheumatology nurses I'm OK to go back to methotrexate, I feel a bit anxious about it, but it has to be done, I'm stiff and sore I need to find a way to stretch.
Last day of week 3, I managed to sit in the garden, don't get me wrong CV is awful but the enforced slowing down has benefits I mean to get into the garden more, it's lovely. Also I'm scared to say thus out loud .... just in case but I might have turned a very very small corner 🤞🤞 lets see. Hopefully no repercussions tomorrow but I did a teensy bit more today
Week 4 15th - 22nd July
So! Some things resume I started back on methotrexate yesterday which always make me feel a bit yuk. But I might feel a teensy bit better?? We shall see, not up to it today but maybe tomorrow a very small walk?
Well it's tomorrow and there will be no small walk 🤦♀️ feel like I overdid it yesterday? I drove to tesco (5 mins away) I think that driving seems to tire me more than anything? Will see
So it's Wednesday I think yesterday's fatigue was a combination of anxiety about cleaners coming, car stress and re starting methotrexate. Rubbish nights sleep just wiped out completely. Hey ho another day lets wait till end of week to review properly
Meantime garden is looking gorgeous! Am loving sitting outside in the morning
Also shed update seems to have a coat of paint now and a space for a window in a weird place?
Wednesday- visible says 4 but I think that's a low 4 going to be incredibly cautious today but I got a good night's sleep last night 🤞very wobbly today very very wobbly tired? Don't think so just wobbly and shaky?
Thursday, complete crash, in bed, I got an OK nights sleep not great not awful but it feels like going back two weeks, Toblerone remember Toblerone.... got too look at the longer game here. Had to laugh chum contacted me asking how I was , I replied honestly but the reply made it obvious they hadn't read my reply! All (most) people want to hear is that you're OK, they tend to gloss over the part when you say you're not ... so my question is why bother asking?
Friday rubbish sleep, wiped but managed to get out of bed and washed and dressed
Also shed update its had a second coat! But still needs a third I think
Saturday and as low as I've been since the start of this, sleep was disrupted and I was able to get washed and dressed but that's about it, if anything this feels as if its getting worse ... I'm shattered and scared
Sunday, made a lot of changes, unfollowed and came out of a lot of swimming related groups etc, that was bringing me down ill join back when I can. Joined a lot of cross stitch groups instead, that's good for mindless scrolling ! On the advice of lovely chum I downloaded free visible health app that will hopefully be good for tracking fatigue. Lets see how it all goes
Week 5 22nd-29th July
Monday-a better nights sleep not amazing but good. Let's take things easy ...
Tuesday- more consistent with sleep, better at pacing, still wiped but am I any better? Not sure but I'm not worse but then i get car emails.... right set back
But these arrived which really cheered me up
Wednesday well visible app says I'm fatigued and I agree! Awful time with doctors refusing phone appointment such lack of care or empathy, phoned Rheumatology nurses waiting for call back
Thursday still fatigued but perhaps not as much? It's infinitesimal the difference lets see how day pans out. Making adaptations, using bottle carrier from Emma to carry around my water bottle
Friday- seeing what causes crashes, I got up today washed and dressed but stupidly I took washing downstairs.... too much way too much, I saw heart rate went into cardio mode, I think when that happens that's when I crash, need to see tomorrow
Saturday - not too much of a crash so far not a great night's sleep but not the worst the phyto v supplements arrived lets see what difference they make still at a 2 on visible
Sunday - oh got a 4 on visible I'll take that, think the good nights sleep helped, going to try yoga nidra. Taking the phyto v let's see where that goes, stupidly let heart rate go up a few times, it's going to take time ...
Week 6 29th July- 4th August - ok managed to get up washed and dressed got another 4 on visible app. Going to take methotrexate again today and see where that goes, am I getting slightly better or just better at pacing? Knackered after full on (under current conditions) day stress with car docs phoning, faffy dinner, also took methotrexate so need to see how it is tomorrow and wed...
Tuesday, rubbish nights sleep thank you methotrexate but overall not too bad? Let's see how the day goes, day going OK so far! Highlight was getting this reply from and mayhem ensued who is doing an incredible job of recreating republican make up 🤣🤣
Thursday - dreadful nights sleep, very hot and disturbed but I feel strangly ok which worries me, I really dont want to overdo this so am trying really hard not too. We will see on saturday maybe how this pans out. Today panned out really well .... now I'm anxious that I've overdone I but I won't know until Saturday probably?
Friday - ok a 3 on visible today I do feel a bit more wabbit but nit as bad as Wednesday pretty good sleep too. Let's see ok? Very very gentle today
Saturday- amazing nights sleep thank you Benadryl still pretty wobbly and wabbit but let's see what the day brings, visible says 4 with my hrv the highest its been so still a ways to go, just not a good day, hr went up to 104 🤦♀️ my own stupid fault.
Sunday - an OK nights sleep thanks again benadryl! Let's keep heart rate down today big day tomorrow 😬 end of day, managed to stay up, did a very very little, need to see how tomorrow goes, did first functional check in on visible got a 3.6 out of 6 it's all physical stuff which lowers the score. Keen to see what it is like next Time.
Week 7 - 5th-12th August Monday, ok nights sleep, managed to get a 4 on visible, keen to see how today goes, big test 😬 so it went OK, managed but slow, lay down in afternoon took methotrexate felt bit wobbly after that let see how it goes
Tuesday managed another 4, slight headache but not too bad? Managed a lap round garden
Wednesday- another 4 on visible, stood in shower got up and dressed for 9 did quite a lot today, made flower Wreath made tea, hmmmm went to bed just in case
Thursday- not the best nights sleep but OK, tired today but not wiped not sure? Stood for shower again. OK did a little bit, almost 1,300 steps? Quite tired came to bed at tea time but hopefully being sensible? Going to try no benadryl tonight lets see if i go backwards?
Friday - good nights sleep with no Benadryl, tired ish today but still up, hrv OK on visible but resting hr bit low so only a 3. Let's see. Quite a full on day, phoned Louise from TT all a but emotional but got things in progress there, finally finally got car finance sorted out can't say what a relief that has been the stress was unreal
Saturday- again only a 3 but I think that's because I said fatigue was moderate yesterday perhaps I should have said mild, visible really needs a more granular fatigue scale. But managed to stay up, had a reasonable night's sleep, let's see how today goes
Sunday- a 4 but I think that's due to my symptom logging need to get more consistent with that, took ages to get to sleep but then dud get a good nights worth, just need to see how today goes 🤷♀️ well I had to go to bed again after dinner i did too much too quickly combined with the heat that tipped me over. But apparently I got a really good sleep which is good. Today was my last dose,of 20mg methotrexate what a relief that is
Week 8 12th - 19th August Monday, pretty tired visible says 3 which I think is accurate, hope to get out of bed though. So I got out of bed, bit of a mixed day. But I made dinner, also glued picture. And when I was talking to Mark I said about going to Doctor but I could manage on my own in 4 weeks time. I thought back to 2 weeks ago when I didn't think I could even go if he drove me. So I think that's quite a step forward?
Tuesday- not great night's sleep but I'm OK not floored lets see, I really should change the bed today not sure if I'm up to it? But tomorrow we pick up car? Do I just leave it till Thurs? Probably should. It been a not bad day? I managed dinner which required stirring and standing
Wednesday- big day today!! Need to drive the car back from Falkirk but more importantly ts an ending to that whole saga, reasonable sleep last night. Taking it easy this morning we can do this. Wobbly in afternoon but mostly because of anxiety about picking up car, also physio checking up because I cancelled training, very wobbly at night, probably doing car plus washing plus emotional
Thursday- tired but not floored, remembered Shakti mat last night I think it helped get a really good sleep
Friday - bit if a headache and shaky/wobbliness again, low blood pressure? Don't know? But really good nights sleep need to see how day pans out
Saturday- reasonable but not amazing nights sleep, managed to get up and put load of washing on, went out in car Mark drove then lunch then put tumble dryer on
Really going to do nothing else today that's more than enough!
Sunday- bum overdid it yesterday, only a 2 on visible but that's because resting HR was too high, vr hr was eventually ok ish but I gamed that! Need to really reign it in today. Just so frustrating. Funny the things which tip you over but I think I am just low today anyway
An ex boss, one who I wasn't that fond of got in touch to organise a group catch up. I'm normally OK with those, don't want to be rude and say hell no! So I gave my very valid reasons for not doing it and that really upset me so so much, just another indication of how much this has wiped put of my life. So two things, Helen and Karen on IG both messaging me, how lovely, and in the blink of an eye things change
Week 9 19th-26th August don't feel too bad this morning, have nurse first hig and hopefully first dose of methotrexate at 15g it will be interesting to see if the lower dose make a difference got a 4 on visible
Well that feels like an age ago. Really stressful and full on day on Monday had to go a second time to docs to sew how to inject myself because they gave me a syringe for my methotrexate 🤦♀️
All incredibly stressful but I did manage to drive myself and injection nurse was really lovely
I found by accident a physio therapist who deals with long covid I saw him on Wednesday that took a lot out of me a lot but it was necessary and also cathartic, had long chat with Mark we are cancelling or putting things back, sad in some cases but necessary. Siged up for full visible with the armband so really looking forward to see how that goes.
Week 10 - 26th August- 1st September OK I'm going to park this here for now. I've got the visible armband and am tracking everything through that now. I'll maybe come back here and update, maybe monthly? Dunno yet its a long road ahead of me and I don't think this journey has an ending well not apart from the normal ending we all have ...
Funny how your life can totally change on a sixpence...
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